The average number of appointments I’ve had each week of late is six.

SIX. And that’s on top of being a full-time student while attempting to work part-time. Last week, I was late for three separate classes because of appointments. It’s awkward.

I’m tired. My body is tired. Ehlers Danlos Syndrome is a fucking can of worms. It’s fairly clear I have a degree of gastroparesis and am awaiting a formal diagnosis of POTS, too. My tilt table test is finally scheduled for Tuesday.

I don’t know how people deal with this. I’m feeling so dejected. The stomach pain and nausea had me in tears yesterday. This morning, I just sat in my car trying to figure out what I could eat that wouldn’t make me feel absolutely awful. It seems that I’m living off of lattes, Zofran, and Glucose Control Boost. Eating is complicated. I’m losing weight, and my residual eating disorder is ecstatic about that. Nauseous? Great, less calories! The part of me who wants to function like a normal person is devastated and confused. And exhausted. Have I mentioned that?

This week, I see my therapist, nutritionist, cardiologist (for the TTT), and someone to recast my feet for new orthotics. I’m supposed to schedule with physical therapy and need to follow up with gastroenterology.



Mini Update

I don’t even know where to start. I fell off the blogging wagon when school started, and there is SO much to update on.

  • Gastroenterology: Upper endoscopy showed inflammation of part of my stomach. Negative Helicobacter pylori biopsy (finally, something I don’t have!). Insurance mess that I’m too tired to deal with, so I haven’t had a follow-up appointment.
  • Nutrition: I met with my old nutritionist, and wow, was that ever a different experience. I wasn’t expecting to leave with instructions to eat less of things. She’s under the impression this is, indeed, gastroparesis and gave me a long list of friendly foods, which was entirely overwhelming. We scaled back and agreed I’d try the low-glycemic index Boost (sugar adds to the nausea), try a different kind of iron supplement, and substitute cream of wheat for oatmeal. It’s so weird for me leave with instructions that involve swapping things out for even lower-calorie replacements. One step at a time, I suppose.
  • Physical Therapy: I went for a month or so, and we decided that this isn’t a good time for me to add PT. I have so much going on already…
  • Occupational Therapy: Silver ring splints were ordered and delivered. I’m waiting on one more for my left index finger, but they help. We’re essentially stuck on doing anything about hand/wrist/elbow pain. I’ve been so depressed that I’m not doing any of the activities that trigger the pain, so it’s hard to determine what would help.

    Holter monitor residue + weight loss. Lovely.

  • Cardiology: I had a holter monitor (which I might end up redoing, as I only made it through 22 of the 48 hours) to rule out an arrhythmia (there isn’t one) as the cause of symptoms and did a 24-hour urine collection. They’re having me further up my salt intake (adding 6 grams of sodium chloride/day) for now. The other clinic I’m working with FINALLY scheduled a tilt table test for early November.
  • ENT: I wound up with yet another sinus infection since my last course of cipro; however, this one was fungal (yes, they send my boogers to the lab). I’m not convinced it’s gone. I had a CT scan done of my sinuses just over a week ago, which just showed a lot of inflammation. We talked about prednisone, but decided on a nasal steroid spray instead. If there isn’t any improvement in a few weeks, my ENT doc might put me under and flush the crap out of my sinuses. Fun.
  • Psych: I’m more depressed than I was and really struggling with eating. My weight has dropped, but I wouldn’t call it a significant loss. I’m tired all the freaking time, which is certainly not helped by pain, fighting infections, or not getting adequate nutrition. My attendance at school hasn’t been great lately, and I’m quite behind with homework. I’m generally exhausted.
  • Genetics: A few weeks ago, my mother & one of my sisters saw the same Medical Geneticist who diagnosed my EDS. After meeting my mother, he’s actually doing the DNA testing for a couple of EDS types (we were initially thought to be type III) and Stickler Syndrome. I really doubt Stickler Syndrome, but it sounds like he just wants to rule it out.

There are, like, ten more layers under every one of those blurbs, but that’s all I have, for now.

Things are difficult.

I’m sinking back into depression rather quickly, and eating disorder stuff is popping up right along with it. I’m scared but apathetic at the same time. I didn’t eat anything at all today, and that’s not like me. I can count on two hands the number of days this has happened in my entire life.

There’s that, and then there’s school. School is…challenging.

The only way I’ve made it through my longer classes without pain (back, neck, knees, hips) is by taking Percocet. It doesn’t make me tired at all, which is great, but I don’t like that I’m taking opiates to get through class.

I Don’t Get It

You’d think that the fluids they gave me yesterday during/after my endoscopy would keep me functional for at least a day, but nope.

I had two pre-syncope episodes today (stood up & went immediately back down) in addition to my heart regularly pounding and what I can only describe as shortness of breath. My evening was so much fun:

5:30 – get home from school, take orthostatic vitals, decide to go to urgent care.

6:00 – arrive at urgent care.

6:25 – brought back to a  room.

7:00 – PA finally gets around to seeing me; two nurses take forever to locate a vein to put an IV line in, which is weird, because I’m usually transparent:

"Hard to locate veins."

“Hard to locate veins.”

8:20 – fluids finish (urgent care closed at 8:00) & I leave

Then I stopped at the grocery store on the way home, because I have nothing substantial to eat. By the time I got home, it was after 9:00. I have homework to do, a sink full of baby bottles & dishes to deal with, laundry, & emails. Oh, and I’m exhausted to the point where my homework doesn’t even make sense.

How the hell do people work, go to school, deal with life, and navigate chronic illness at the same time? What the fucking fuck?

On (Not) Eating

There are a multitude of reasons why I’m struggling to eat lately.

The nausea became disruptive late last year. Initially, I thought it was because of my eating disorder. I used to be horribly bulimic and purged nearly everything I ate, so it made sense that I was experiencing discomfort with eating when I stopped purging–my body wasn’t used to actually digesting that much food. As days of not purging turned into weeks, and weeks turned into months, it felt strange that the nausea hung around, but nobody seemed concerned. Unlike ever before, there were foods that made me feel sick just by their smell. Desserts and pretty much anything with a high sugar content were also downright unappetizing (I never thought I’d say that).

Until lately, though, I ate enough to maintain my weight. In fact, I gained about 15 pounds during the past six months. I’m assuming part of this was my body attempting to figure out where the hell my set point is, and it took a lot of Zofran to eat that much food, but it didn’t actually hurt.

Now, eating hurts. The nausea is still here, and the moment food (or more than a few ounces of fluid) hits my stomach, there’s sharp pain. Not cramping, not bloating, not “Oh, I’m so full!” discomfort. Pain.

Not only does food hurt my stomach, chewing hurts my jaw. I can’t remember my TMJ ever hurting as it has of late. As someone who used to be horribly bulimic, dreading eating feels weird as hell–and disturbingly convenient. I’m not going to lie–truly not wanting to eat brings about a weird calm, as turning down food used to feel impossible–and that’s where it gets complicated. There’s still a residual fucked up part of me that gets excited when I lose weight, even though I know I don’t need to.

I absolutely do not want to return to the hell of an eating disorder. I’m terrified of throwing up due to the nausea, so I’m very reluctant to eat or drink when I feel it. I think throwing up (involuntarily) would be horribly confusing, and I know that voluntarily throwing up would be ridiculously easy. It’s a line that’s blurry to the extent of barely existing.

Yes, I think about purging, especially as the nausea and pain have worsened. When my stomach hurts, I know throwing up would make me physically feel better (in the immediate sense, anyway), and that’s scary. The desire to purge does not feel connected to weight, guilt, negative body image, or anything of the sort.

Complicating things further, in the last month, I’ve lost about seven of the fifteen pounds I gained during the previous six months. I’ve never been able to lose weight without purging, so this is new territory for me. During the day, I’m totally aware that not eating enough is a slippery slope, but my thought process tends to go something like this:

Oh, cool, I haven’t eaten many calories today–maybe I can lose some of the weight I gained. I don’t need to lose weight (I actually believe that). Oh, shit, I haven’t eaten many calories today–my brain isn’t going to work, and I’ll have trouble sleeping tonight. I need to eat something substantial, but everything substantial involves too much chewing, and I’ll be even more miserable if I’m in pain. I could have Ensure, but that’s too much liquid. I guess I’ll a little bit of yogurt (or something similar).

I eat the yogurt, and the ensuing pain prevents me from eating for hours afterwards. As this pattern repeats over days and weeks, I lose weight, and losing weight is confusing. Eating is confusing. Everything is fucking confusing.

I have an endoscopy scheduled in a few days, so hopefully that’ll bring about some answers.

First Day of School

Today is the first day of classes for the Fall 2013 semester, and I’m nervous. I’m not nervous about it being new, and I’m not necessarily nervous about meeting new people, either. I’m anxious about being the disabled girl. Or worse yet: (the perception that I’m) the girl who fakes a disability.

Some days–most days–I will be wearing a brace of some sort. Today, I have braces on both knees, my wrist is wrapped in a lidocaine patch (I can’t find the brace for it), and I’m wearing the first of my ring splints. I only got these yesterday, so they still feel pretty awkward. I feel awkward.

People who know me from last semester will probably ask some variation of, “What happened to you, now?” and those who don’t will probably just gawk at the braces when I’m not looking and not talk to me. I don’t want to answer questions. I want people to understand, but I don’t want to deal with explaining it. It’s too much.

I arrived on campus early today for a multitude of reasons. I didn’t struggle much falling asleep last night, but I was wide awake at 4:00 this morning. Staying in bed, making myself more anxious, seemed like the lesser of evils, so I got ready and left before my alarm went off. I was planning on staying in a coffee shop all morning, but I couldn’t ground myself. I went to the grocery store and got some snacks, called to schedule more OT appointments, and then scraped last semester’s parking permit off my windshield to replace it with the new one.

Ah, yes: parking. I didn’t hesitate to arrive on campus before 8:00 this morning, because I knew I would get a regular parking spot just as close to the buildings as the disabled ones. This way, I don’t have to use my disabled parking permit and deal with the anxiety that stems from being afraid of someone confronting me. I know it’s silly to be afraid, but I have enough to deal with today already. I don’t need to add the feelings that come from using the disabled parking permit. I won’t do this every day, but like I said, it’s one less thing to think about today.

My professors have already received the “You have a student with a chronic medical condition” emails. 2/4 of this semester’s professors are new to me, and while I’ve heard great things about these new professors, I can’t help but wonder how they will perceive me upon actually meeting me. The third professor had me last semester, and I was a pretty big mess. I’m embarrassed about last semester, and facing her will inevitably bring some of those feelings back. This will be my 7th semester in choir with the fourth professor. I emailed him last night and attempted to briefly explain what I’ve learned over the summer. The autonomic dysfunction has the potential to be pretty important, considering our rehearsals last nearly two hours. I haven’t had major issues with this in the past, but it explains why I generally felt like crap during choir as of late.

I’m off to pick up my accommodation letters and then have to go back to my car before class starts, because I forgot to bring my morning iron dose with me.

I will not let this semester be a disaster. Nope, not happening…

This Week’s Crap

Well, I’m feeling better this week than I was a few weeks ago in the sense that I’m less depressed and in a better mood, overall. This week certainly hasn’t been boring, though.

On Monday, I saw my ENT doc (Otolaryngologist) because I’ve suspected I’m developing another sinus infection. He seemed sort of baffled. I was quite asymptomatic–I could still breathe through my nose, no sinus headache, most of my boogers were clear, I wasn’t totally miserable, etc. He shoved his scope up my nose and found the little pocket where the green streaks were hanging out, sucked them out, and sent them to the lab. Yummy. A nurse called me on Thursday letting me know that some “funky” bacteria did show up, and it wasn’t either of the ones that showed up last time. The doctor sent 20 days of ciprofloxacin (2x/day) to the pharmacy. This is the second 20-day course of cipro I’ve been on this summer for sinus infections and means I’m taking Florajen now, too. Great.

Also on Monday, I met a Gastroenterologist. He wants to do an upper endoscopy, which is scheduled for early in September. He put me on Prilosec (omeprazole) for acid reflux. He also ordered some labs, and I got those results yesterday (Friday). I’m pretty damn anemic (shocker), and he wants me to take 325 mg of ferrous sulfate three times/day for six freaking months. After picking up a boatload of prescriptions from Target on Thursday, adding yet another supplement/pill/whatever is the last thing I want to do.

My favorite part of the things added to my drug cocktail this week is that they’re pretty much all contraindicated. I’m not supposed to take the ferrous sulfate within 2 hours of an antacid or antibiotic (both of which I’m on), and I’m not supposed to take antacids with Cipro, either. In other words, there are three different things I’m supposed to take first thing in the morning, and I shouldn’t take any of them within 2 hours of one another. Like, just, wtf? I think I’m going to go to the pharmacy and ask them to help me figure it out.

I met my physical therapist on Tuesday, and I’m hopeful about that. She gave me a brace for my right knee that’s identical to the one on my left under the theory that I’ll be compensating the same way with both hips, which will be less painful.

I also met with my DVR counselor on Tuesday, which resulted in an Assistive Technology Assessment being scheduled on Friday. The guy who did the assessment is recommending a smartpen, Dragon, a new MacBook (!), and arm rests that take weight off of my shoulders (I can’t remember what they’re called.). We’ll see what the DVR will actually pay for, but hopefully something will help.

On Thursday, I went to the dentist. My teeth are fine, which is great. Opening my mouth like that really aggravated my TMJ pain, which has made me pretty miserable since. I’m trying to only eat softer foods, but this has proven difficult. I’m not lactose intolerant, but dairy certainly doesn’t help anything. I’ve been avoiding it, but it seems like greek yogurt & cottage cheese are my main options for protein that don’t involve much chewing.

Of course, diary is contraindicated with cipro. How do I win?!

*head hits desk*